The fear of having a child with mental handicap crosses the mind, it is safe to say, of every parent during pregnancy. For some the fear is realised. We would all like to think that an effective, comprehensive, caring system swings into action to help these parents and their children. But it is clear from the recent stark documentary on RTE, "When Happiness is a Place for your Child", that the reality is very, different for many parents.
Many professionals are unhelpful, leaving it up to parents to find out what they can through their own efforts. There are too few services, both in day care and residential care. Far from being the beneficiary of a smoothly functioning, caring system, the parents may face a lifetime of struggle. The programme featured one elderly man who cares for a wife with Alzheimers and for a mentally handicapped adult son. His great fear is what will happen to them if something happens to him.
It was clear from the programme too, that the term mental handicap often fails to convey the totality of the afflictions visited upon these families. In reality, a great many of the children and adults concerned are multiply handicapped, and need unremitting attention through their lives. Moreover, there are parents who cope with not one but two or three such children. And while they do their work with affection and in most, though not all, cases at affection in return, they face the reality that, for them, there will be no end to this.
They also face the painful reality that their child's quality of life will always and at all times be decided by other people. The day of personal independence will never come. They sacrifice their own dreams for their children. Sometimes their marriages do not survive the strain. They are, after all, not special people they are just like the rest of us and find it all just as hard as the rest of us would find it.
As a result of protests by parents, new money totalling £57 million has been put into mental handicap services since the start of the decade. That is a lot of money but it has not been enough. Money, however isn't everything. It is clear that health and social service professionals could transform the lives of the families affected by mental handicap if they were prepared to help them by telling them what is available and what is not, if they were willing to lead them by the hand through the bureaucratic maze, and if they could bring themselves to give these families to borrow a phrase from another context parity of esteem. Here is an area in which the Department of Health could, at relatively little cost, do a great deal to improve matters.
A great many people with mental handicaps have hopes and dreams, just like the rest of us. They suffer pain and despair too, like the rest of us. We need to recognise this more. For example, to be removed from home into residential care on the day the surviving parent dies must be a most traumatic event. What parents want is for their child to be introduced gradually to residential care while they themselves are still alive, so that this terrible trauma can be avoided. We could do it if we wanted to if we wanted to do it badly enough to be willing to spend the money on it. And why shouldn't we? In this country we oppose abortion as a response to handicap because we say we value life too much. If that is so, then let us pay for it.